About twenty percent of people on the planet have Reynaud’s Disease/Syndrome/Phenomenon. The numbers vary depending on what source you cite, but no matter where you look, it is clear that this is not a common ailment. It is, however, something I suffer from.
Some people have called it being allergic to the cold. To me, it is more like having a stutter in your arteries. The blood vessels are called on to do something quite ordinary and natural, but they get freaked out and overwhelmed by it and then don’t operate properly. When it kicks in, I feel like I become the ambient air temperature. I feel like I wear the flesh of a dead person. It can be harder for me to speak because of the decreased feeling in my face.
I noticed this happening when I was a teen. I saw that I was the only one in PhysEd who could not warm up while running track in cooler temperatures. I found out that not everyone’s hands turned bright red and hurt afterward. Not everyone’s toenails looked bluish.
I tried to make myself resistant to the cold. It never worked. Even with mind tricks. All I did was suffer through more rounds of vasospasms.
Reynaud’s isn’t something that goes away. It doesn’t matter how much you weight or what your diet is. You are stuck with this thing. You can treat it somewhat, but doctors don’t even know the cause so all they can really recommend is to not get cold and not get stressed out.
When I traveled to the UK, I was the only one wearing a winter coat almost all the time during the spring and summer. I even sprained my ankle in Scotland because of Reynaud’s.
I was in a library in Edinburgh using the internet and well of course my feet were cold, that is nothing new, but what I didn’t feel was that my foot had completely gone to sleep. When I stood up, I did not know my foot was without feeling and set my weight down on it incorrectly and tah-dah! There I was with a sprained ankle.
And, then, oh, I have the very most absolute fondest memory from a road trip that brought me up to New York from Arkansas. We were crossing the mountains of eastern Ohio at night. I was in the back of a large, rather drafty van under a pile of blankets. The van was an antique. Never mind shocks, it didn’t have any heating or insulation.
It was supposed to be warmer under extra layers, but I felt like I was going to go into shock and die of cold. My entire body trembled for hours in blackness. The weight of the blankets did nothing to stop the cold from seeping into my bones. They did nothing to retain my body heat.
I was exhausted, but falling asleep was out of the question.
The rattle of the truck discouraged conversation with the driver so I rambled to myself. I couldn’t articulate words with frozen lips or say anything meaningful through my chattering teeth anyway. Maybe there were angels around, but they certainly provided no distractions to help pass the time. I was my own damned pep squad that night.
I willed myself to hold together and for the driver to press on through to get us down from the higher elevations as soon as possible.
I remember carrots. I think I had a bag of carrots to nibble on to give me the energy keep shivering through the night. I never wanted the dawn to come so badly in all my life.
Really. Freaking. Good. Times.
Another time I recall was an occasion that brought me to San Diego before I lived out this way. I could not change the settings in the airplane were I was seated and eventually I ‘froze to death’ from the air conditioning. So because of Raynaud’s, I made quite the questionable first impression on those I met.
I can’t live down the fact that I had to ignore everyone and curl up in front of a fire place to try to get my system back in order. I think I made an effort to explain myself, but saying you have some disease that causes arterial spasms doesn’t go over well at social gatherings. No one wants to hear that there is anything wrong with a ‘pretty, young girl.’ Weakness is too much of a downer, right?
Society. Go. Figure.
Climate control isn’t popular Baja. The weather never gets down to freezing that often. Even so, it’s hardest for me here at night when my limbs have gone too cold and I want to go to sleep. And it is frustrating when you are the only one really suffering the climate and everyone thinks you must be used to it because I grew up in Massachusetts. O, magari!
I am writing this because it is essentially winter and I wonder how many people know of, or have thought about people with Reynaud’s now that the cold is here?
I mean, as much as I can explain it- how it feels/what it is like, I don’t think anyone (besides my mom who also suffers the disease) grasps how much I have endured by living on the street of New York or by posing long hours for artists in drafty classrooms and studios or by rehearsing and performing on icy feet with this disease.
While circumstances have changed somewhat this year, I am almost forty and I am not in a place where I can simply turn up the thermostat like so many of you first worlders out there can. I have to put on another layer, another démodé coat and continue on like I can manage this. O, magari!
Reynaud’s Super Secret Pro-tip:
Try Diosmin & Hesperidin.
It is a citrus fruit extract.
You may or may not tolerate it so don’t go testing it on yourself without a doctor knowing.
I took it for another health problem and discovered that it helped with my circulation.
You cannot take it for more than a few months so this is not a cure all, but it may help you get through the worst of winter.
I don’t know why this isn’t talked about more on any of the non-profit / awareness sites but I found: